Celiac Disease Foundation 2014 Conference Wrap-Up

Day out at the Celiac Disease Foundation Conference

Day out at the Celiac Disease Foundation Conference

As always, Celiac Disease Foundation puts on an amazing conference that’s both entertaining and educational – and plus has gluten-free food (can you really beat that?). There were many great speakers that covered the spectrum of education – from diagnosis to nutrition. I’ll try to add as much as I can from the conference on here – but keep next year in mind so you can actually attend one of these conferences in person!

CDF's Marilyn kicks it all off!

CDF’s Marilyn kicks it all off!


So I know you think that I’ll just swoon and talk about Dr. Fasano the whole time. And you’re probably right. He’s such an awesome doctor and even though he talks at lightning speed in Italian, he was the best presenter by far. It also doesn’t hurt that his new book Gluten Freedom is amazing and I totally was a fan girl – even if I never got my book signed.

Next year…


Below are some key learnings from the doctor. Now, I’m paraphrasing, but I’m going to get as technical as I can from my notes. Remember, I am not a doctor, nor do I play one on TV – but Dr. Fasano is. He talked about major milestones that science has discovered since they started studying celiac. These are noted in bold and labeled “milestone.”

  • Milestone: There’s a recipe for celiac disease: 1) genes 2) something from the environment that will put you over the edge, attacking the body and 3) a leaky small intestine.
  • Celiac is the only autoimmune disease in which we know the instigator – gluten
  • Celiac is the only autoimmune disease in which food is a treatment (not a cure – there is no cure)
  • Milestone:  There’s an understanding why gluten is toxic. We as a species evolved to not eat gluten – for 99.9% of time since the dawn of time, we have been gluten-free. However, the birth of agriculture (and the grass family HORDEA – wheat rye and barley), we didn’t evolve to deal with these grains. As a whole, we cannot completely digest gluten. If undigested pieces of gluten find a way to come through intestine with leaky gut, it exposes the system for gluten. But should everyone go gluten-free because of this? No. Most of the time, people can win against this invader in your system (like most bacteria we fight off every day). However, those who don’t win against the gluten invader are celiacs.
  • Myth busting: Have grains been changed to kill us all like some crazy books suggest? No. There is no genetically modified wheat and this is not the reason why there are more diagnosed celiacs.
  • Myth busting: Fad diets. One third of Americans are consuming some gluten-free products. When asked why people are on a GF diet, 50% said to live a healthier lifestyle (not celiac disease). 24 million people in the general population are eating gluten-free to lose weight. While there is a fad component of the diet, Dr. Fasno is upset when journalists just want to address fad diet aspect. But it’s not a fad for for celiacs. It’s like INSULIN FOR DIABETICS. Those with diabetes will die quickly if not taking insulin, but for a celiac, if they are not on a GF diet, and will die slowly.
  • Gluten sensitivity is still “in the working stages” of being figured out. He thinks that Wheat Belly and Grain Brain are extremes, “if you don’t eat gluten-free you’ll be extinct as a species or won’t be intellectual,” but he believes there has to be something in the middle. If you respond to gluten with autoimmune = celiac, if you have an allergic reaction= you have a food allergy, if you are part of the rest = you have gluten sensitivity.
Classifications of gluten disorders

Classifications of gluten disorders

  • Milestone: They figured out the evolving spectrum of celiac disease diagnosis. There is an unparalleled test with IgA serological testing. In the future, they’re looking for a diagnosis without an endoscopy.There’s a test for kids with classical symptoms with genetic and high blood marketers that don’t have to do an endoscopy, but unfortunately it’s not out for adults yet.
  • Milestone: We are not born celiac. They used to believe that if you have the genes and eat gluten it’s your destiny, but not so much. We in the midst of an epidemic of celiac – in the past 35 years the prevalence of celiac disease in US have doubled every 15 years. The key factors include the quality of gluten, the quantity of gluten consumed, breast feeding, gut functioning, timing of gluten introduction, and changes in the gut microbiome. There’s still so much more to come.
  • Milestone: There are potentially alternative treatments integrated into the gluten-free diet like: genetically engineered grains, proline proplyl endopeptidases, zonulin inhibitor, CCR 9 inhibitor, and a peptide based vaccine.
  • Milestone:  They’ve figured out how much gluten is too much – the “less than 20ppm” threshold. See photo below:
< 20ppm rules!

< 20ppm rules!

Next we heard from LabCorp about the genetics behind celiac disease. Here are some fast facts:

  • Fewer than20% of patients with celiac disease have been formally diagnosed.
  • The average time between onset of symptoms and diagnosis is  11 years. Why so long? Celiac symptoms are shared with other disorders, and it’s not very high on physicians’ radars.
  • What are your options for testing for celiac when you’re already on a gluten-free diet? You can go on a gluten challenge for 2 months waiting for antibodies to return so you can do an IgA test and a biopsy, or you can have an HLA genetic test, which is accurate regardless of diet.
  • The gene variants for DQ2 and DQ8 are positive in people with celiac, but not everyone with a positive genetic test will get celiac disease – only the potential to have celiac. This test is good for ruling out celiac disease. It has an accuracy of greater than 99% and you only need to genetic test once in your lifetime since it won’t change.

IMG_0101 IMG_0102 IMG_0107

There was a lot of information in the conference, and I have many more slides to go through, but I thought those were the most pertinent to post online.


I’d also like to thank the Celiac Disease Foundation for inviting the bloggers to their annual VIP dinner after the conference. This was a delicious dinner and I was luckily with some amazing company to boot!

VIP Dinner - Vegan Gluten-Free Wine Love

VIP Dinner – Vegan Gluten-Free Wine Love

I'd be vegan if every meal was as delicious as this!

I’d be vegan if every meal was as delicious as this!

Alison and I are attached to our phones. Obviously.

Alison and I are attached to our phones. Obviously.

Vegan apple pie for dessert at the VIP dinner!

Vegan apple pie for dessert at the VIP dinner!

Check out my next post about Celiac Disease Foundation’s 2014 Expo next! Lots of nom noms!


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1 comment

  1. CJ June 13, 2014 at 1:16 pm Reply

    Keen write-up — thanks, Erica! Almost makes up for having missed Fasano — and your — talk. Almost.

    How can a celiac blogger get sick, have a car breakdown, and miss her carpool on on one weekend? Like I did. At least I made it for the tail-end.

    The myth-busting of Fasano should be legendary. No pun.

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